Mag,
Two things...Can you check your mail settings so that replies go to the list rather than only to you, and I'll send your questions on the pump to Janet, as she's got the first hand knowledge.
Also, if you have mixed CP (spasticity and dystonia) or primarily dystonia, talk to your doctor about doing an ITB test with an external pump, rather than a bolus dose. That's what Janet's doc did, and it worked out well for her (the second time - the first doc did a bolus and it didn't do much for the dystonia). We actually ended up traveling 200 miles to find a doc who was experienced with ITB in mixed/dystonic CP
Kendall
________________________________
From: ken barber [mailto:[log in to unmask]]
Sent: Mon 9/4/2006 11:31 AM
To: [log in to unmask]
Subject: Re: [C-PALSY] I'm new here - muscle stiffness
i hope it works for you too. it has helped many, but,
not for everyone. hope you will fall into the first
catagory.
--- Tamar Raine <[log in to unmask]> wrote:
> kendall,
> I'm going to be trying baclofen pump... finally got
> xrays that show my hip
> muscles are so tight they're pulling the joint all
> wrong and that is why
> I've got so much f000ing pain. Ii am on vicodin by
> day, and endocet at
> night for pain control. I really am praying the
> baclofen pump works because
> i dont know if i can take another year like this!!!
> arghhh..
>
> Tamar Raine
> [log in to unmask]
> Now serving tee shirts! and soon to come, Maui
> posters and other items;
> www.cafepress.com/tamarmag
>
>
> > [Original Message]
> > From: Kendall David Corbett <[log in to unmask]>
> > To: <[log in to unmask]>
> > Date: 9/3/2006 5:39:29 PM
> > Subject: Re: I'm new here - muscle stiffness
> >
> > Mary Katherine,
> > =20
> >
> > Janet says:
> > =20
> > The balance and coordination issues sound a lot
> like CP, and even if =
> > it's not CP, you're dealing with the same issues.
> When I was in my early =
> > 30's, my functional abilities started to decrease,
> so walking got =
> > harder, the range of motion in my arms decreased,
> and in general my =
> > muscles were stiffer (or tighter). So I went to
> my Doc, and got an =
> > increase in my medication and in the course of 10
> years, I got a walker, =
> > a new (to me) drug, a neurologist, a baclofen
> pump, and a really good =
> > massage therapist/body work practitioner. Ask
> anybody on the list, asnd =
> > they'll tell you that aging makes CP harder to
> live with, even at ages =
> > that aren't generally considered to be "aging."=20
> > =09
> > =20
> > I also found that "regular" PT wasn't that
> effective. It was only =
> > after I got the baclofen pump that I found out
> what stretching was =
> > supposed to be like. Now I can stretch and have
> it make a difference, =
> > in that my muscles won't immediately go back to
> the "pre-stretch" state; =
> > the same thing goes for massages. It seems that
> "regular" orthopedic =
> > docs don't quite know what to do with people with
> CP, yes it's odd, very =
> > odd but I think it has to do with experience.
> They're used to dealing =
> > with relatively straightforward problems, and CP
> is complex, especially =
> > as we age. =20
> > =20
> > You might try seeing a neurologist, as sometimes
> muscle stiffness has =
> > a neurological basis. You would hopefully get a
> good work-up, and =
> > perhaps a prescription for a muscle relaxant. I
> know that if I didn't =
> > have good pharmaceuticals, I would be curled up in
> a ball so tight that =
> > it would take a crowbar to straighten me out.
> > =20
> > Congratulations on finding a practitioner who
> can help you - that's =
> > half the battle. Good luck with your quest to
> find more answers.
> > =09
> >
> > Janet (and Kendall) Corbett=20
> >
> >
> > ________________________________
> >
> > From: Mary Katherine Powers
> [mailto:[log in to unmask]]
> > Sent: Fri 9/1/2006 6:19 PM
> > To: [log in to unmask]
> > Subject: [C-PALSY] I'm new here - muscle stiffness
> >
> >
> >
> > Hello,
> >
> > I hope you don't mind my being on this list. I'm
> new. I do not have
> > CP, but I have issues with chronic muscle
> stiffness that cause pain and
> > make movement difficult. I'm doing physical
> therapy for it. I was
> > hoping to get some suggestions on dealing with
> muscle stiffness that
> > might help.
> >
> > what I can do is limited, so the stretches have to
> be really gentle.=20
> > I've tried doing stretches too hard and had a lot
> of trouble moving
> > after that. I've been told to take it easy and
> build up slowly.
> >
> > I have chronic pain in my legs, back, neck,
> shoulders, arms, and
> > occasionally fingers. I'm overweight and I've
> been told that although
> > that does not help, it's not the cause of the
> problem. I was told I
> > was out of shape because people much more
> overweight than I am have
> > more mobility. I agree with this, but my muscles
> have always been
> > stiff. It's just the way I am.
> >
> > I can walk but it is difficult. I'm hoping the PT
> will make it easier.
> >
> > Also, I was a preemie (11 weeks early) and I have
> the typical balance,
> > coordination, etc. problems. my vision is not
> great and I have no
> > depth perception. that really is not the problem
> though, it's the
> > muscle stiffness that gets to me.
> >
> > any suggestions on dealing with muscle stiffness
> would be appreciated.=20
> > when I tried googling it, all kinds of information
> on all kinds of
> > different conditions, like Parkinson's, came up,
> none of which I have.
> >
> > another strange thing, and I was wondering if
> anyone could comment, is
> > that I've had no luck going to "regular" PTs who
> were recommended by my
> > doctors. they are at places like "sports and
> spinal" and some other
> > group, and they tend to be very cursory, don't
> understand what I'm
> > talking about, and then circle a couple stretches
> on a piece of paper
> > and tell me to do them, and usually I can't do the
> stretches they want.
> > It's weird. I went to someone today at a place
> called Pain and
> > Rehabilitation Medicine and I spent $250.00 for an
> appoinment that
> > lasted about an hour. It was like night and day -
> he was excellent.=20
> > he does not take insurance and still he has a
> waiting list about 2
> > months long.
> >
> > Any experiences like that, where the "regular" PT
> places recommended by
> > doctors just don't work? I find that odd, like
> they should know a bit
> > more about what they are doing.
> >
> > thanks,
> >
> > Mary Katherine
> >
>
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